Building Better Respite: Hearing the Voices of Carers Communication and Information

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1 Building Better Respite: Hearing the Voices of Carers Elaine Fielding, Elizabeth Beattie, Meredith Gresham, Christine Neville & Margaret Readford Australian Journal of Dementia Care, 1(4): Family carers of people with dementia have told us that respite services are critical to their ability to continue caring at home. In this article, we examine family carers perceptions of their interactions with care workers during the respite process, with an eye towards building a description of a respite service that is responsive to the needs of carers. We focus on two main topics: What aspects of their interactions with health workers do family carers talk about most often? What suggestions do family carers have for improving the staff-based elements of respite services? The research results described in this article come from a larger study entitled Respite care in dementia: carer perspectives, in which we interviewed 336 carers of people with dementia living in communities across Australia about their use of, and satisfaction with, governmentfunded respite services. Carers talked about their use of the following types of respite care: In-Home (n=135) health worker comes to home to look after person with dementia. Care Centre (n=135) person with dementia goes to a respite centre during the day. Residential (n=116) person with dementia goes to a residential aged care facility (RACF) for an extended stay, usually at least two weeks. Emergency (n=14) person with dementia is cared for in an institutional setting (hospital, residential facility, etc.) on an emergency or unscheduled basis usually for a short period, for example 2-5 days. Other (n=46) other type of respite care, including: private respite care, organised day trips, hostel accommodation, in-home overnight care, gender specific groups, short-stay cottage style, and out of home care being provided at the health worker s home. For each type of respite service used, family carers were asked the following questions: How has (type of) respite been helpful/unhelpful for you as a carer/for the person with dementia? Why do you intend to continue using it/not continue using it? What could change about (type of) respite to make it more useful or convenient for you and the care recipient? In answering these questions, the family carers often commented on the nature of their interactions with health workers. While these comments were sometimes negative and sometimes positive in tone, we can group them around the following themes of how health workers interact with family carers and care recipients during the respite process: communication and information background and training consistency/continuity nature and quality of care provided family carer influence in the treatment and care of person with dementia Communication and Information

2 Family carers praised health workers and service representatives who were clear and informative with them about the range of respite and other carer support options available. They also appreciated the opportunity to interact with other carers of people with dementia. One carer stated it this way: It [Care Centre respite] has given me much information on the various agencies to contact re assessment, carers allowance, case worker etc. Also useful to share with other carers the trials and tribulations of everyday care of a loved one. They provide the tissues when I am in need of a good cry. A number of carers noted that they would have liked regular communication from the health workers about the care recipient s activities, behaviour and care received over the respite period. For example, one carer had the following suggestion:...it would be very handy if the person that's done the in-care could either leave a note to say what she's done or that she writes a letter or something later to me so that I can tell what's happened. [In-Home] Background and training Family carers need to feel that they can trust the respite care service to provide a safe and appropriate environment for the care recipient in their absence. Much of this trust depends on the background, personality and training of the people delivering the respite care. Carers need to feel confident that the health workers will treat the care recipient with kindness, but also with an awareness of the challenges of dealing with a person with dementia. Some relevant quotes from carers in our study were: It has given me the opportunity to continue working knowing that he is well cared for. [Care Centre] They are very gentle with her and have an excellent understanding of how to work with dementia....they are very understanding when she is angry or won't get dressed or insists on wearing something ridiculous. She is very happy there; no one forces her to do things. [Care Centre] Other carers were concerned about what they saw as a lack of caring or dementia-specific training in the respite care workers they interacted with: the carer needs to be more thoroughly trained in the care of dementia people. Not just general carers. [In-Home] The staff were rough with [care recipient]. There were too many clients and too few staff. It wasn't a nice place. The staff need to be trained and supervised well to ensure they are capable, competent and caring... [Care Centre] One carer summed up what s/he saw as being critical elements of training for respite care workers: Areas that I feel carers require improved training in are: confidentiality, reliability, punctuality, basic good manners, truthfulness, respecting the patient s dignity, choice of words when speaking to the patient, engaging the client in conversation and most importantly that they alone are responsible and accountable for the patient during respite hours.

3 Consistency/Continuity Those providing respite services need to be aware of the potential stress that changes in routine and unfamiliar persons or places may have on people with dementia and their family carer. For In-Home respite in particular, the experience of having a stranger in the home can be difficult, as this carer noted:...sometimes it makes life harder as she becomes agitated and more confused with a stranger in the house and it takes me a long time to settle her again. [In-Home] The best scenario from the point of view of the carer and care recipient would be consistency in the specific health worker who provides respite and in the place in which it is provided. For example, these carers stated: There is always a sense of security when the carer is regular and I feel (he/she) gets to know [care recipient]. I hesitate if I cannot get a carer that knows him. [In-Home] Going to the same place [Residential] each time is helpful - because he is able to get to know the routine there, and the staff. Only thing that detracts from an otherwise excellent service is the pure logistics of getting the same carer to the house at the approx same time each visit, makes my planning of the day much easier. [In-Home] Nature and Quality of care provided Issues of the nature and quality of care provided during the respite process were very important to family carers. If the carer felt their relative was receiving high quality and stimulating respite care, it helped them believe that they could continue caring for the care recipient at home. Some carers noted that the respite experience provided the person with dementia care or activities they would not have been able to provide and that the care recipient looked forward to attending. One carer described their experience with Care Centre respite as follows: The [name of service] in particular is just wonderful - I hate to think what our lives would be like without it!... [the] girls make him feel useful and give him a wonderful time - I just wish it was available EVERY day. On the other hand, some carers felt the standard of care was so low that it threatened the health or safety of the care recipient and created more stress for the carer, e.g., What is unhelpful is perhaps coming home and realising dad hasn t been cared for properly, for example he may have weed on the carpet and the carer didn t clean up. So I feel like I m coming home to more work and they should make it easy. [In-Home] Essential elements of care mentioned by carers in this survey included the following: the activities available to the person with dementia; the proper administration of medication; attention to toileting and personal hygiene issues; and consideration of the unique needs and tastes of the care recipient. Two carers had distressing stories following stays in Residential respite:

4 Handling of PRN medications has been a disaster despite supplying them on admission. Respite care provider seems to prefer leaving clients in disposable nappies during [the] night taking up to 45 minutes to respond to requests to take my wife to toilet. She is unable to take herself in the respite service provider s premises. My wife is not incontinent and finds it distressing particularly when the disposable nappies leak and clothing has to be changed. When [care recipient] is in respite he is left in bed all the time even after l ask for him to be sat out of bed after his shower. When showered his hair is never washed with shampoo. The last time he came home from respite l had to shower him he was that bad. Hair greasy groins in a shocking state pressure area on his bottom blocked catheter. The standard in nursing has decreased and l also feel if you cannot speak up for yourself or do for yourself it s worse. Asked one day if [care recipient] could please have a shower l was told he was TOO DIFFICULT Carer influence in the treatment and care of person with dementia Carers interviewed in this survey expressed a desire to be involved in the ongoing treatment, care and activities plan for the person with dementia. From the other side, respite services and health workers could benefit from more knowledge of what a specific person with dementia would like to do and how they would prefer to be treated. The details of what was desired in a particular case varied widely, as shown by these two opposing quotes from carers receiving In-Home respite: Most of them don't want to do housework, they all want to take [care recipient] for drives to town and tell me they can take him to the Dr. etc. I am quite able to take [care recipient] to town to do the shopping for us etc etc., and they don't see why then should do house work to enable me to do these jobs, or even have more time just to sit with [care recipient]. They think that is their right to sit and watch TV with him. At present in-home respite care is not aimed at persons who have a form of dementia at a young age ie under 65 who are able to do things for themselves. My experience and what I would like to see happen that the expectation is not just to clean, cook, etc but also to interact with the person ie. talk, an outing maybe like a movie, especially for persons who do not have family or friends around to do these things with. A third carer just felt s/he was not consulted:...at no stage did they say "how can we help you" or "how can we work together"?...they would come in and take over our lives basically [Care-Centre] Finally, one carer stated that they would discontinue use of In-Home respite because there had been a disagreement with [professional] carers about end of life arrangements such that their wishes were not going to be upheld by the health workers involved. Conclusions In examining family carers reports of their interactions with health workers involved in the respite process, we identified some characteristics fundamental to building better respite services. The overall conclusion is that family carers would like to see respite services that are more responsive to carer and care recipient needs and preferences. Carers in our survey provided both explicit and implicit suggestions for improving those aspects of respite care that involved their interactions with health workers. These suggestions fell into the categories

5 referenced above, namely: communication and information, background and training, consistency, quality of care, and carer/care recipient influence on the care received. From these suggestions, we propose the following as important elements of a consumerresponsive respite service for carers of people with dementia: Provide information and advice to carers about the range of respite and other care support options available to them. Provide referrals to other agencies or services as appropriate. Have a structured system of communicating with carers about the care, activities, health and wellbeing of the care recipient during the respite period. Employ health care workers with suitable backgrounds and attitudes towards people with dementia and their care needs. Provide all staff, at all levels, including domestic staff, with adequate dementiaspecific training to enable them to deal with common behavioural and physical needs. In relation to In-Home respite, where possible keep the number of different health workers caring for a care recipient to a minimum. In relation to Care Centre and Residential respite, make the activities age appropriate, stimulating and interesting to the care recipient. Provide more health workers to improve the staff / care recipient ratio. Include family carers in the treatment and activities plan of the care recipient and provides them with a range of options from which to choose. Develop a system or form for finding out about the individual care recipient s specific needs, preferences, and favourite activities. A summary of this study appears on the DCRC website: respite_care_summary_report.pdf.